Romania’s Csaba Dégi: We need to be proactive about psychosocial support, because Ukrainians are suffering

Ukrainian refugees and displaced persons with cancer are fighting a double war for survival—which is why aid networks and providers must prioritize psychosocial oncology, said Csaba Dégi, executive secretary of the International Psycho-Oncology Society.

“They don’t show suffering upfront. They tend to hide their suffering. They tend to have survival and to have dignity put first,” Dégi, an associate professor at Babes – Bolyai University in Romania, said to The Cancer Letter. “And I do remember that in the first days, some of the nurses that we are in contact with and who are working at the different hospitals and institutions, they said that these patients are crying—‘I hear them crying when we are walking on the floor, when there is no one around, and the doors are closed. They’re crying.’”

When Russia invaded Ukraine, IPOS immediately contacted its members in five countries that border Ukraine to put them on high alert and to set up a network that can serve as a resource for Ukrainian patients.

“Practical advice for patients and also for providers of cancer patients is very, very important,” said Dégi, who is also founder and president of the Romanian Association for Services and Communication in Oncology. “So, we try to, first of all, be on high alert mode with our professionals that have been in our society and are on the ground and the closest to the cancer patients who are coming from Ukraine.”

IPOS is a member of a special network convened by the European Cancer Organisation and the American Society of Clinical Oncology—in partnership with the World Health Organization and the European Commission—to help Ukrainian cancer patients (The Cancer Letter, March 11, 2022).

“The second thing is we are getting, filtering, and making resources available as fast as possible,” said Dégi, who serves as a steering committee member for the ECO-ASCO Special Network on the Impact of the War in Ukraine on Cancer. “The third thing is we are trying to amplify the message that the mental health needs are there, and we have to tackle them.”

In Romania, more than 60% of Ukrainian refugees are moving to more developed countries in Europe, but not all cancer patients will end up in a cancer center, Dégi said.

“Some patients just manage their situation on the move. And maybe some are afraid to go or to ask for help in a country which they don’t really know,” he said. “One company from Germany is providing psychosocial screening and management through an application on the phone which offers cancer distress screening.

“[Ukrainian patients] certainly need this kind of online virtual instrument to have the so-called self-monitoring and self-management of their cancer distress.”

Psychosocial support for these patients can improve both their mental and emotional resilience as well as medical outcomes, Dégi said. 

“The war is absolutely dreadful. And it’s longer than we expected,” he said. “So, if we just put in a little bit—maybe 2% or 5%—extra effort, then these persons are going to have a very different experience and a very different outlook, not even just on their medical situation, but also on their personal situation. 

“Because emotional and social experiences tend to blanket our life, they’re just not sectioned. I think that we actually can make sure that we are having less suffering, compared to without any help on this psychosocial part.

“You have to be proactive. You have to open little doors,” Dégi said. “You have to pay attention to the hidden signs.”

Dégi spoke with Matthew Ong, associate editor of The Cancer Letter.

Matthew Ong: Thanks for speaking with me, Dr. Dégi. Much has been written about the clinical and medical needs in Ukraine over the past month. But what are you learning about the psychosocial effects of the invasion on Ukraine? I can only imagine the magnitude of human suffering, loss, and pain.

Csaba Dégi: Thank you for starting with this question. We happen to call it disaster survivorship. We were thinking about putting that in words, because for a person affected by cancer all the time, survivorship is something you are planning for. You are making decisions every day.

I think this part is not going to change very much. And I think that on the medical side, most of the neighboring countries, which are open to people coming from Ukraine, are actually providing free of charge what they can. But most of the time, oncological treatment in Europe is almost the same in EU countries.

But there is a difference when we are talking about psychosocial needs, about the suffering that is coming with your cancer. It’s also coming with the emergency situation that we estimate around 20,000 cancer patients are experiencing on their way out of Ukraine. Or their transition in different countries around Ukraine, like Poland, Romania, Hungary, Moldova, and more.

What I can tell you from the experience that I have—I’d actually like to share with you three important experiences that we have on psychosocial needs. The first thing that we are very well accustomed with in Eastern Europe—because oncology treatment, most of the time, is not comprehensive—it’s not integrative as it is, for example, in Washington.

For decades, in these countries, in this region of the world, cancer and cancer treatments means mostly a medical approach. So, that means that we have learned in the last 20, 30 years—may I remind you that in January this year, we finally succeeded in Romania to have a National Comprehensive Cancer Control Plan? We were the last country in the European Union that didn’t have one. And the revolution was in ‘89.

So, this perspective change from “patient” to “survivor” and from medical needs to comprehensive needs, including the psychosocial, it’s really troublesome in these areas.

These people are walking in, and most of the time they get the best medical treatment that we have. For example, in Cluj here, where I am living, we have at the Oncology Institute around 50 patients from Ukraine. But on the psychosocial side, we are not that developed.

We like to call it ourselves like building resources. That means that researchers, advocates, and people who are very much dedicated to psychosocial needs, like I am, we know that in this part of the world, you have to be proactive with the psychosocial needs, because people are more open to surviving, to keeping alive, and to get rid of the tumor.

And because of the lack of the resources, they don’t pay any attention, or very little attention to the way you are affected by the psychosocial. And it’s the way your survival very much depends on it. Because I’m very much sure that you agree with me that people with cancer are not just walking tumors. They’re people. Because before patients, everyone is just people.

It’s very important to understand what a patient coming from another culture, from another region, is facing in this part of the world. And when you are in this kind of an emergency situation, sometimes you have to make a decision. You have to make a personal choice, if you listen to your psychosocial needs, or you are very much involved to get the medical care that you cannot live without.

So, what we can see is that people who are coming from Ukraine, and this is true also for the patients that are coming in Romania, for example, and the other countries, that they don’t show emotions.

They don’t show suffering upfront. They tend to hide their suffering. They tend to have survival and to have dignity put first. And I do remember that in the first days, some of the nurses that we are in contact with and who are working at the different hospitals and institutions, they said that these patients are crying. “I hear them crying when we are walking on the floor, when there is no one around, and the doors are closed. They’re crying.”

Of course, they are people. They are very much suffering. But we have to do more to be proactive because the psychosocial suffering, it’s rather hidden, because we tend to prioritize in an emergency situation. But this, it’s like a double war, because they also have their personal war with cancer. But they also have a war situation that they have to deal with.

So, the first thing that we want to make sure and say very loud is that you have to be proactive in the psychosocial needs, and services, and resources. Because if you are waiting for the moment they are going to ask for help, and you don’t do any screening on the psychosocial needs, then you are actually keeping the suffering bigger and bigger.

You have to be proactive. You have to open little doors. You have to pay attention to the hidden signs. Like the signs that I’d told you that they are crying when there is no one around, because emotions tend to have their very personal dynamic.

The second thing that we came across is that professionals who are working or have been working before with cancer patients in Ukraine. For example, we have the Ukrainian Psycho-Oncology Society. Maybe you are familiar with the fact that I am working with Mike Morrissey and with ECO and with ASCO in this very special steering committee.

But my background is in psycho-oncology. I was a director for five years at the International Psycho-Oncology Society. And I am now an executive secretary. We have our headquarters close to you in Toronto; we used to have it in New York.

So, what we see from the Ukrainian Psycho-Oncology Society, we have members from more than 110 countries in the world. What we can see is that professionals tend to adapt very much to the situation. So, we have an Excel table with all the professionals who are still active with their Viber numbers, WhatsApp numbers, Skype IDs, and all technological and online possibilities.

They are trying to provide resources, and to ease the suffering on the way in the situation. And actually, it also happened that psychologists are from Ukraine who are speaking mostly Ukraine and Russian—those who I had the chance to talk with. And they’re also looking for work in Romania. They want to work as psychologists and come from this background.

The third thing that I would like to share with you, I think it’s a resource, an instrument that the COVID situation prepared us very well for. For example, one company from Germany is providing psychosocial screening and management through an application on the phone which offers cancer distress screening. It offers very personalized management, like mindfulness-based techniques, nutrition, different kinds of physical activities, and also tracking of your cancer distress.

So, they use it in Germany at very important hospitals like Charité in Berlin, and they are guided by the University of Medicine from Leipzig. This company, for example, and we also from Romania have a similar application that we use, came to the ECO and said, “Let’s discuss it, because we are offering it free. We have a very valuable instrument that we can share that we can translate to Ukrainian and maybe other languages as well.”

Because we have to be very realistic about the fact that not all cancer patients that are coming from Ukraine are going to end up in an oncology center, because some patients just manage their situation on the move. And maybe some are afraid to go or to ask for help in a country which they don’t really know. 

The reality is that most of the people coming from Ukraine—for example, in Romania, more than 60% of them are going to other countries, more developed countries in Europe.

So, this question of helping patients with cancer with their mental health, it’s not just a question of the neighboring countries. It’s actually a question of most of the European countries, because they tend to go to the places that are more developed. Nevertheless, the idea is that patients are patients. And access to health care, it’s also based on the trust that you have in the healthcare provider or the system.

So, some of them will not end up in cancer care centers. They certainly need this kind of online virtual instrument to have the so-called self-monitoring and self-management of their cancer distress. This is possible on a certain level for a level of distress that is manageable with these evidence-based exercises and tools.

But of course, again, this is for those people and for those patients affected by cancer who not necessarily will connect or contact a cancer care provider in different countries of Europe. These are the three things that we have seen emerging as needs, and also as possible responses that we get.

Thank you, Dr. Dégi. Could you give me some more background about what the International Psycho-Oncology Society is doing to respond to the Ukrainian crisis, and also with your membership across Europe?

CD: ECO is the largest organization that we have, a professional organization in Europe on cancer policy, on cancer treatment advocacy, and very much into changing the cancer landscape in Europe. And ECO has almost 50 professional societies as members. One of them is the IPOS, the International Psycho-Oncology Society. I think it’s as old as your journal, because it was founded by Dr. [Jimmie] Holland back in the 70s, in New York.

The idea was to get as much evidence and resources on the human side of the cancer as possible. So, she started this society as of means of getting the multidisciplinary oncological team with evidence about what is happening with cancer patients, why it’s important to have this psychosocial needs met, and how does it make a difference in their quality of life, how does it make a difference in their survivorship planning, and so on.

The International Psycho-Oncology Society, in this moment, we have been doing three things. One of the things which I think is important is to keep our resources conglomerated, to put it together. So, what we did—we took all our active members from five countries, bordering countries with Ukraine and contacted them, somehow put them on a high alert mode to be sure that cancer patients have a place to go. And our professionals, of course, are in contact in these countries.

For example, there is a Hungarian Psycho-Oncology Society. But also there is the Hungarian Psychiatric Association that is offering their services. They offer highly professional services to people with cancer coming from Ukraine. And not just cancer, because for example, the Hungarian Psychiatric Association offers help for mental health problems or needs to all who are asking for.

So, this is the first thing that we did. We contacted all our active members in these countries and in this IPOS Federation. And we said, “Look. Are you open? Are you willing to have a very high alert mode and collaborate with us? Because things are shifting very much.”

We have seen different needs during the weeks. And unfortunately, the war is in the second month. We are expecting a longer period when these situations have to be handled, and most of the time it is crisis mode.

The second thing that we did is that we provided most of the content for the psychosocial section of the ECO. As you probably know, there is a very special website that’s called europeancancer.org/help. This is the website of ECO, which is actually a joint collaboration with the ASCO, and with the WHO. And on this website, you will find that for each country, there are special sections. We have a section on psychosocial needs. So, we have provided on a constant mode, all the resources that we have found in these countries.

We also have a closer collaboration on a platform that is called Wondr Medical. Wondr Medical, it’s a platform for health professionals. And this is where we also have this ECO and ASCO network because it’s much more interactive, and it’s a little bit quicker than the update of our website, which is very important as well. But we can somehow make things a little bit faster with very close interaction between us.

So, the second thing was this—providing all the support on the psychosocial needs in all of the countries that we have information or resources so that things are in one place, because there is a high risk that information is seconded or doubled, or in a way information is getting just chunked up, and the patient goes to different places.

This is, of course, again, not for a person who is in crisis. A person who is in a crisis needs a piece of information, and most of the time it’s really helpful if you can find everything in one place. So, this is the idea of the special hub of the ECO, ASCO, and WHO. And this is the psychosocial part that I have been coordinating, the resources part.

I’ve been getting all this information and trying to put it in one place in as many languages as possible. National languages from around these neighboring countries—Ukrainian, Romanian, Hungarian, Polish, and so on. This was the second thing that we did at IPOS. And also, soon, we are planning to release two webinars, which are on this very special situation we call disaster survivorship, and also on how it looks like to provide emergency mental health help.

This is something that we have been seeing in other war situations. The WHO has a very good experience and they also have very reliable resources for this. I kindly recommend you also check their psychosocial resources that we have on the ASCO webpage, because they are published in ASCO Connection, a special part of their website.

There, we have a blog which is on the psychosocial support for patients affected by cancer and the war. I think we have the third blog that was published on how we are dealing with this situation, how we are dealing with feelings in these situations, and what are the questions that need to be asked.

Practical advice for patients and also for providers of cancer patients is very, very important. So, we try to, first of all, be on high alert mode with our professionals that have been in our society and are on the ground and the closest to the cancer patients who are coming from Ukraine. The second thing is we are getting, filtering, and making resources available as fast as possible.

The third thing is we are trying to amplify the message that the mental health needs are there, and we have to tackle them. We are also trying to provide very clear Q&A-like things on the ASCO collaboration that we have for people affected by cancer and also for the cancer providers.

This is how we are uniting and unifying our resources, and I think this is in the best spirit of multidisciplinary care for people with cancer. I’m very happy that ECO and ASCO, as world leaders in developing the changes in oncology, I’m very happy that we succeeded from the first day, and we didn’t leave out the psychological impact of the war, especially for persons who are affected by cancer.

CD: Thank you for this question. I think as we are shining a brighter and brighter light on the psychosocial burden of cancer, but also on the psychosocial interventions that are easing the burden of cancer. We actually can see some very clear evidence, and this is why I am so much trustful that this intentional professional help that we are providing with psycho-oncology is actually changing, modifying the cancer experience.

Psychology is a very interesting research area, because compared to other fields of research, in psychology, you are assessing a situation. You are doing your field research, and you are actually trying to explore the needs; right?

For example, one of the very special needs in COVID was the fear of cancer recurrence. It was very interesting, and a lot of articles were published on this topic, because people didn’t have the chance to go to the doctors, or they were afraid to go because of the virus. In their very personal experience, the fear of cancer just would grow like a very special, distressing emotion. So, we are not just exploring this.

We strongly believe that we have to modify what is possible. And certainly, wellbeing is modifiable. Anxiety symptoms, depressions symptoms are modifiable. So, that means that quality of life or also elements of quality of life that can be changed, especially in the psychosocial part, and maybe also in the functional part of the wellbeing.

We see from the research—I am very happy that you asked me—just a few days ago, we finished the European Lung Cancer Congress, and I was asked to give a talk on the psychosocial perspective in lung cancer. This is very interesting, because in the first decades of the psychosocial research in oncology, we have seen that if you pay attention to the psychosocial needs, and you also offer responses to the psychosocial needs, then two things will happen.

First of all, patients are going to be more collaborative. They are going to have better communication with the oncology team, and they are going to have a better uptake of the cancer treatment. This was very clear because there is an element of pain, distress. Cancer distress is an element of pain that you’re actually changing because you hear it, and you have a response to it.

The second thing that we have seen in the first decades of this research was that communication, interaction with the cancer team is changing. So, there is a better outcome, including the medical outcome. As you know, the research got stronger and better and better, and there were better methodological setups, and bigger samples, and representative research. We came to see that, actually, this effect is a little bit wider. It goes farther than just the treatment situation.

It also goes into the quality of life. And I think it’s not a great surprise that, like in Europe two years ago, when we adopted on a European level the Europe’s Beating Cancer Plan—it’s something that you have in Washington for the Cancer Moonshot; it’s almost the same kind of cancer policy document.

When we put it on the table, the fourth pillar of the cancer journey was quality of life and survivorship. So, we had screening, we have treatment innovation, and we also have this part of quality of life, which is now officially a part that waited for decades to be heard.

I can tell you that this part of the research on an international level—if you are taking a look at the Psycho-Oncology journal, for example, the official journal of the American Psycho-Oncology Society and of the British Psycho-Oncology Society—if you take a journey from the 70s to the 2000s, you are going to see that all over the world in different cultures, this data is coming up.

If cancer patients are screened for psychosocial needs, and there is a management of all the psychosocial needs—of course, we are talking about a layered, stepwise management. Not everyone needs therapy for depression. Some just need a few exercises to be learned. We call it psycho-emotional exercises or teaching. But others are in very much need of depression therapy interventions, and maybe also including drugs.

So, when we take a look to this evidence, we can see that if you have this system in place of psychosocial screening, and psychosocial management, and quality of life, it’s almost all the time. It doesn’t matter which culture or which continent of the world they will have, the person affected by cancer will have a benefit in quality of life in their wellbeing.

And here comes one of the biggest questions: does it have any effect towards survivorship? You see, these things are very interesting, because I remember there was a very big debate in the 80s about an intervention—a group intervention, actually, for psychological support for cancer patients that shows that there might be some kind of impact on this.

But it was very early on criticized by statisticians, that this is actually not as we would like to see it, because they replicated the cancer survivorship rates in the same area. They found that there was no difference between the survivorship rate of the group members, and the general population, or the cancer population from that area.

But in the past few years, for example, in 2017, and this year in 2022, in the Journal of the Comprehensive Cancer Care Network, the NCCN, from the USA, there came out two papers, two articles. And I’ll tell you about the latest one from this year, which came out a month ago, which says that quality of life is indeed associated with survivorship in gastric patients, for example. We have similar data for lung cancer patients from 2017.

We will have to do more research on this, because cancer, it’s not a mental health disease. Cancer, most of the time it’s a solid or a fluid tumor. It’s a biological, genetic disease. It’s actually having an impact on mental health, but itself, it’s not a mental health disease. We have to be very clear with this.

But you see, we can be sure that if we have psychosocial needs answered, then the people affected by cancer are going to be much more resilient in their personal communication and decisions that they are taking, related to their treatment and collaboration with the medical team.

We certainly see a generalized effect on their quality of life and wellbeing. And we are talking about physical wellbeing, psychosocial wellbeing, functional wellbeing. And of course, when we are talking about functional well being, we are also talking about cancer and work, which is a very special issue, for example, in Europe. But I am very familiar that this is also a very special issue in the USA. You have survivorship clinics. We don’t have them yet in Europe.

I personally very much believe that we will have to get there soon. So, we know this, and in the last part of doing better and better research, we see that in some cancer types, we can speak about psychosocial interventions towards survivorship. 

Nevertheless, I think they are just a very good sign that we not only have to keep up and shine a light on the psychosocial burdens, but also on the possibilities with which we can ease the burden, because it looks like—certainly for decades and on different levels of beneficial influence—we can see the impact from these interventions are moderate to high.

I was talking about these interventions on a very general level with a generic cancer patient in mind. But, of course, there is not a generic cancer patient, because every cancer and every cancer patient is so different. This means that unfortunately, inequalities in cancer care are also highly impacting the cancer distress.

It’s a very different cancer distress for people coming from different vulnerabilities. Did they have a different socioeconomic background? Or people who have a very different identity from the mainstream identity? So, we try to see more and more. And as we are getting closer to the specific needs, we see that cancer distress, it’s very much different, and also higher in some cases in different vulnerable populations.

So, that means that psychosocial screening and psychosocial interventions have probably a bigger benefit for those with multi-layered suffering. Maybe they are coming from a low socioeconomic background, or maybe they are members of the LGBTQ+ community. Or maybe they’re from a different ethnic background.

So, I just wanted to highlight this because this is very important. The suffering is very much different, and also, because it’s higher, and it’s different, it makes sense to not forget this because they would have a bigger benefit if we are investing, and taking a close look at their needs.

Thank you. Speaking of Dr. Jimmie Holland, I think I’ve interviewed her once, probably eight years ago.

CD: You’re impressing me. She was the goddess of our field.

CD: I think it always comes down to one important question: is there a patient without being a person? Because there is no such kind of patient. What I mean by this is that we have to learn and not forget that, even in emergencies and crises, persons affected by cancer are, first of all, persons and people.

In the medical field, in oncology, Dr. Jimmie Holland was lucky in a way because her husband was an oncologist. She was in the right place, and with the right chosen message to fight for multidisciplinary treatment. What does it mean, multidisciplinary treatment? It means that we don’t forget that the person in front of us is not just a tumor. It’s not just a diagnosis. It’s just not just some sort of code; right?

It took like 30, 40 years to accept that there is a comprehensive oncology setup, and there is an integrative oncology framework that is actually working really well, and patients love it and need it.

But sometimes, when something unexpected happens like COVID—I can tell you this because there are some papers in the Psycho-Oncology journal from the British Psycho-Oncology Society—there were papers about how the professional psycho-oncology professionals are experiencing this situation. You see, what happened in the first part of the COVID is that we tried to have the same rule to all cancer patients.

For example, in Europe, we said, “Cancer patients are at a very high risk. So, all cancer patients have to be handled by the same risk category.” Well, it took us not more than maybe two or three weeks to realize that our patients are still very different. And for some, there is a higher risk with COVID. And for some, there is a lower risk with COVID. It took like a few months to realize that they are also experiencing the same, or maybe not the same, but they have their psychosocial burden.

And one of the biggest burdens was the fear of cancer recurrence or the fear of cancer. So, I would very much like to recommend to you, on the ECO website, you are going to find a COVID-19 impact calculator. This is a web page where we try to collect all the data on the impact of cancer in different European countries. And you will see, written in black and white, that actually one of the biggest impacts of COVID in Europe and oncology was on the psychosocial level.

It’s like a double war, because they also have their personal war with cancer. But they also have a war situation that they have to deal with. 

Some groups in the first part of COVID didn’t have a chance to meet the cancer patients. There were no means to connect the patients. Everything was just cut off for a few weeks. So, COVID was a crisis, and it took us a few months not to forget that we have very different cancer patients. The risks and the resilience is not the same for everyone, even though they have the same kinds of cancer, maybe.

Unfortunately, in this crisis situation, we lost touch with the psycho-oncology needs with the cutoff. And then, it took us depending on the resources that you had in your country. It took us a few months to reconnect these things.

This is also a part of the story that we see now with the war happening. Yes, the war is absolutely dreadful. And it’s longer than we expected. And millions of people are trying to have their safety. But also, at the same time, there are people who are trying to be in a safe place with their illness, with their cancer.

Even though sometimes, there are very clear language barriers, I think that if we are proactive a little bit and we understand that emotional needs are not going to be upfront—they’re in the same envelope. This is the same person. Of course, it’s not upfront. But it is there.

So, if we just put in a little bit—maybe 2% or 5%—extra effort, then these persons are going to have a very different experience and a very different outlook, not even just on their medical situation, but also on their personal situation. 

Because emotional and social experiences tend to blanket our life, they’re just not sectioned. Like, I feel safe maybe in one part of the world and not in the other. If you are succeeding to feel safe, then this is a capacity that you can use and grow next time when you are going to a new place.

So, psychosocial, psychological, and social experiences are blanketing our activities. I think this is the most important thing, for us to be proactive enough, and to not forget that we are persons and then patients. This is something that should be remembered, especially when we are in an emergency, because COVID has shown us the same thing.

Also, of the war situation, it’s a little bit similar. I think that we actually can make sure that we are having less suffering, compared to without any help on this psychosocial part.

Thank you so much for describing that in detail. Did we miss anything?

CD: You had very good questions, and you were very thoughtful, and you made me have very long responses! I’m very sorry. I think for the moment, this is what I can tell you from here.

That’s perfectly fine. Thank you so much for your time.